The AFA Blog

Words From a Prayer Book

by Carolyn N. Berger, L.C.S.W.

Friday night I went to temple with my friend Al at Beit Simchat Torah in Manhattan, the world’s largest LGBT synagogue.  Al sings in the choir and often invites me when there’s a special choral service.  He knows I love the music and enjoy dinner with him afterwards. But at this Friday’s service, while idly flipping through my prayer book, I read something that stopped me in my tracks: 

 “As a community of lesbian, gay, bisexual, transgender and straight Jews, we have experienced the ways in which LGBT families are erased from the Jewish Community and family life.  Because of the way we love, some of us have lost our children or have been excused from their lives; many of us will never be legally recognized as the parents of children we have raised.  Likewise, many us of are the children of parents who are not recognized.  Yet, despite this, we know that our relationships are holy and our families are real.”

Over thirty years ago Beit Simchat Torah temple was established by people who felt the need to build a new temple community where they could be accepted for who they are.  On Saturday mornings the place now teams with kids and their parents, a testament to what this temple has become. 

Over dinner Al explained the words in the prayer book.  He pointed out that if a gay person leaves a heterosexual marriage and tries to get custody of his children, he may fail—simply because of his sexual orientation. Many states, he also explained, still don’t recognize gay marriages; a child conceived within a gay union may not be considered related to his non-biological parent. Legally, it’s as though one of his parents never existed. 

 I was aware of all these realities before---I have helped gay and lesbian couples create families through adoption and third-party reproduction—but tonight was the first time I felt them so deeply within my heart.

 I am a straight woman and when my husband and I divorced, the law supported our desire to have joint custody.  No one blinked--there wasn’t the smallest hint of worry that I or my husband would lose our children because we were dissolving our marriage. Our children could not be “excused” from either of our lives.

 My children never experienced a kind of family life where one parent was legally recognized and the other was not.  In all kinds of places and under all kinds of circumstances, my ex-husband and I have the right to make decisions regarding our children’s welfare. Not so in many LGBT families.  What does it do to a child to have one parent who is the “real” parent and the other who is not?  What does it do to a couple where one partner has legal authority and the other is powerless before the law?

 Today there are about a million LGBT parents raising two million children, often without the support of their faith communities, their families and the laws of their state. This is shameful.

 In spite of this, most of these families are thriving.  Perhaps the Beit Simchat Torah temple prayer book says it best:  “…we know that our relationships are holy and our families are real.”

 Carolyn N. Berger, LCSW, is Founding Board Chair of The American Fertility Association and Chair of the Adoption Advisory Council.  She has a private practice specializing in Fertility, All Family Building Options and Adoption, with offices in NYC at NY Fertility Services, and in Westchester.

Finding Faith this Easter

by Merry Armentrout, The AFA's Director of Communications

For Christians, Easter is a time of celebration.  I always look forward to the church service on Easter Sunday because I know the pulpit will be filled with beautiful flowers, the hymns will have a festive tone and a huge brunch will follow the service where I will try desperately not to spill anything on my  new Easter dress.  We're celebrating the Resurrection of Jesus, and a time where Christians can't help but remember the love Jesus has for his children. 

What happens when Easter rolls around and you don't feel much like celebrating?  Maybe you're dealing with infertility, undergoing IVF or in the thick of the adoption process, and you're just not in the mood to be festive.  Maybe your problem has nothing to do with starting a family, but life's other challenges have you trying to keep your head above water.  This Easter, my family is struggling to find joy, to find faith.

My father has struggled with glaucoma for years, and lost most of the vision in his right eye a few years ago.  Last Thursday, he had a minor eye surgery on his left eye, and developed a staph infection in his eye.  Less than 10 hours later he had lost all vision in his left eye.  The doctors told him this week his retina might regenerate in a year, but there are no guarantees.  Hopefully he'll be able to see well enough to read, but he will never drive again. He is legally blind. This would be hard news for anyone to receive, but one of my dad's passions is collecting antique cars, and the thought of never driving again really hit him hard.

It has been a hard week for my family. I flew home and spent hours in doctor's offices and hospitals, getting a glimpse of the hell my dad has endured.  I watched the proudest man I know, ask me to walk him to the bathroom in an unfamiliar restaurant.  I helped my mom learn how to use the computer so she can help my dad check him emails.  I heard the bravest man I know say he needs a break from the hourly antibiotic drops he has to put into his eyes- could he just skip one time?  I heard both my parents crying as we sat in church yesterday, thinking I didn't notice their tears, as I wiped my own eyes.  We're trying to adjust to a new life, but are left questioning why we were put in this situation.  My prayers are intertwined with pleas for dad's sight to return, and angry accusations as to why God would have this happen.  It's very difficult to watch someone you love so much go through something so terrible.  What I need right now is faith, and it's the one thing I'm having a hard time finding.

For me, faith is not blaming God, but trusting Him.  Trusting everything will be okay, trusting my father will find the determination to get through this and trusting the same man that raised me with such temerity, will be the same man who emerges from this battle.   I just spent the last week looking at my father's face- it was not full of faith, but fear and dejection, and my father is the ringleader of our group, the one who drags us to church every Sunday since we were children.  If he can't find faith, how possibly can I?

I don't know.  I'm sure you're looking for something more inspirational, but it's the truth.  I don't know how I'm going to find it, but I have faith I will.  I might not be in a celebratory mood this Sunday, but I will put on my new Easter dress, go to church and appreciate the beautiful flowers and uplifting hymns.  I will then turn to one of my dad's favorite bible verses.

Philippians 4:6-7

⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

 

If I have to read it a hundred times, a thousand times, I will. I'll read it until I find the faith, until I find the peace.  And so will my dad.

I don't know what battle you're fighting, or if you're even fighting a battle at all.  But I do know it helps to realize you're not alone in battle.  My cousin always told me she smiles at everyone because you never know what that person might be going through.  Life is tough.  Life is unexpected. But as one of my favorite poets, Robert Frost said, "In three words I can sum up everything I've learned about life.  It goes on."

Might as well go with it.  And find time to celebrate.

 

 

 

Passover and PCOS - a Guide to Healthy Eating

by Corey Whelan

Tonight, Jewish families and their friends will be gathering around Passover seder tables, to tell the story of Moses and the exodus of the Jewish slaves from Egypt, centuries ago.  Like most holidays, this one will feature an abundant feast as well as the camaraderie of loved ones.  For many women who have  polycystic ovarian syndrome however, the feast on the holiday table may feel like a carbohydrate laden land mine waiting to go off.  As someone who has successfully combated PCOS through diet and exercise, I wanted to share some info on PCOS as well as a few of my own eating strategies with you.

First off, Polycystic Ovarian Syndrome, or PCOS, affects around 10% of women of reproductive age and is quite prevalent among Jewish women, particularly those of Ashkenazi descent.  An endocrine disorder, PCOS is categorized by insulin resistance and results in irregular menstrual cycles, hirsutism and struggles  with weight, as well as infertility.   There is thought to be a genetic component to PCOS and insulin resistance, which is why it is more prevalent in certain populations than in others. 

A hormone, one of insulin's jobs is metabolism of carbohydrates, fats and proteins.  For women who are insulin resistant, the body's normal metabolic response is reduced, causing weight gain, which is triggered by the intake of foods that are high in simple carbohydrates.  Some research currently links the insulin resistance - carbohydrate connection to decreased fertility as well.

So what's a girl to do when faced with the potato kugel, matzoh ball soup, and sweet wine that are mainstays at the Passover table?  Here's what I do.  

• While eating  matzoh is pretty much required this time of year, remember that just one sheet of unleavened bread has the equivalent in carbs and calories as one slice of the leavened stuff, and limit your portions.  For other foods, consider making substitutions.  It's easier than you might think.
• Instead of the usual potato kugel, break tradition by making a delicious new variety using  spinach or zucchini and mushrooms as the main ingredients.
• Instead of sweet wine, pour a drier variety, and drink in moderation.
• Hold the matzoh balls!  Your mom's chicken soup will be just as tasty without this usual plop in, and you won't feel laden down and sleepy by the end of the seder.
• As with every meal you eat all year round, fill up on healthy veggies, lean protein and some fruit instead of going for the starchier foods.
• Impress everyone by reaching for the fresh fruit when its time for dessert instead of the candied ones.

Another wonderful new holiday tradition to consider is a late night walk as a family after the meal to help burn off calories and build muscle. 

Take advantage of the fact that many people are now trying to limit their carbohydrate intake in order to break the insulin resistance cycle, and lots of cookbooks and websites are cleverly catering to this population of health conscious folks.  There are tons of free recipes available for you to download, here are a few you can try:

• http://cookeatshare.com/popular/low-carb-kosher-for-passover-recipes
• http://lowcarbdiets.about.com/
• http://kosherfood.about.com/od/pesach/Passover.htm

For those concerned with gluten or who have been diagnosed with Celiac Disease, you can buy gluten free matzo here:

http://glutenfreebay.blogspot.com/2008/03/new-source-for-gluten-free-oat-matzo.html

Next year in Jerusalem!

 

A world on fire.

  by Corey Whelan

It feels like the whole world is on fire right now.  Civil unrest and natural disasters have been nudging the stressometer up notch by notch in our collective unconsciousness for awhile now, I think.  I remember reading newspaper articles years ago about the Cold War and how constant anxiety about the bomb was increasing the daily stress that Americans (and I'm sure Russians too) lived with, like a sort of  low level whirring sound in the brain that you forget is there, but that never really recedes.  

Headlines this weekend about that fool, that monster, that idiot in Florida and the violence that has ensued since he burned the Koran pumped up the jam just enough to flip me out completely.  It just feels like open season now, not just on Americans world wide, but on the whole species Human Being.  As it has always been, I guess.

I thought about all this while I was running this morning.  Three miles in and I started to think about stocking up on bottled water.  Five miles in and I started to think about the talk I need to have with my children about all this and how I don't want to.  Seven miles in and I remembered the reason why I started running in the first place.

Many of you who haven't known me for forever find it hard to believe that once upon a time I weighed around 50 pounds more than I do now.  Pregnancy with multiples, and a marriage that was shredding itself to bits turned into a lust for bagels, maple syrup and low fat dulce la leche frozen yogurt that I deluded myself into thinking was ok for me to eat on a daily basis.  And then 9/11 happened.

My babies were small then.  I remember thinking, if I have to run out of a burning building with one kid under each arm, would I be able to do it?

And the answer was no.  I was too overweight and out of shape to run and get my babies and myself to safety if I ever needed to.

So I went for a walk.  A very long walk.  And a few days later I went for a run.  A very short run.  And I threw out the bagels and all the high carb crap I had let my PCOS insulin resistant body get addicted to and I slowly became my old, healthy-weight self again.  Strong, thin, and robust.  My own personal best for my own physical self.

People, look.  I don't know what's coming next, none of us do.  But I do know that no matter what comes, and also no matter what doesn't come, the species human being, all of us, deserve the right to be our own personal best.  For me it's being a runner who weighs 115 lbs.  For you it may mean being a walker or a tennis player who weighs 135 lbs.  But whatever your own personal health best is, I urge you to acheive it.  It is better for your fertility.  It will be better for your pregnancy and your baby, God willing.  It will be better for you no matter what life brings.  Really.  

Think about maybe joining in and doing what The AFA staff will be doing for NIAW.  Think about doing a Fertility Bootcamp, if that feels like a fit for you.  Think about doing something.  And then just do it.  

I don't know what's coming next.     

A London Fertility Charity, Chana, Provides a Lifeline to the Orthodox Jewish Community

by Lisa Marsh, The AFA's London Correspondent

I recently attended the 1^st International Medical Conference in London, hosted by Chana, a not-for-profit organization serving the Jewish community.  In this ground-breaking event, Chana brought together specialists in fertility medicine, Rabbis from the UK and Europe, local GPs, midwives and counsellors, Kallah teachers (Jewish pre-marital instruction) and members of the community.

I attended the conference, titled "Facing the Fertility Challenge Together," to learn about the part that Jewish (Halachic) law and culture play in a couple's decision-making process about fertility treatment.  While Jews represent only about 2% of the population in London, and only .5 % of the total UK population, the greatest concentration of Jewish people are in the areas of Hertsmere and Barnet in North London, comprising 11% and 14% of those communities, respectively.  The majority belong to one of the Orthodox Jewish sects, ranging from the Modern Orthodox to the Ultra-Orthodox.  I think it’s fair to say that within those communities, both religious and cultural traditions govern the way that individuals conduct their personal lives.  Their Judaism is inseparable from the rest of their personal identity.  The Orthodox community favours early marriage, some still arranged by parents to ensure appropriate matches, and large families.  On the one hand, I wondered how individuals within that community cope when faced with infertility and pregnancy loss.  On the other hand, I wondered how religious leaders within the Orthodox community respond to some of the ethical dilemmas posed by ever-changing technology in fertility medicine.

Chana sprung from the need for mutual support of a few infertile, Orthodox Jewish women fifteen years ago.  It has developed into a large, charitable organization dedicated to informing and supporting infertile people across the entire Jewish community.  According to Carolyn Cohen, Principal Social Worker at Chana, they hold many fertility-related, educational programmes in the London area and have provided support through its Helpline to callers from as far away as South Africa.  Callers are not asked any questions about their religious affiliation or beliefs.  However, it must be emphasized that Chana takes a sensitive and respectful stance on the place that rabbinical guidance plays in family matters within the Orthodox community.  In the Conference guide, it is noted that “Rabbonim (Rabbis) advise members of the public to seek professional Rabbinical guidance before embarking on fertility treatment.”  

As you may expect, in practice, even among Orthodox Jewish fertility patients, some will involve their rabbis in the enquiry, discussion and decision-making process, and many others will not; afraid perhaps of what their judgment will be.  One might suspect that Orthodox Rabbis are restrictive, operating under very old-fashioned values and uninformed about matters of fertility, medically-assisted conception, the use of third party donors and new technologies.  I discovered that, far from shying away from the very progressive area of reproductive medicine, the Orthodox community is using its strong links within the medical field to educate itself about the causes of infertility and miscarriage, the emotional impact they cause upon the couple involved, the availability of treatment and its accessibility. There were 90 Orthodox Rabbis present among the 400 people attending the Conference.  Dr Simon Fishel, Managing Director of Care Fertility Group and a member of Chana’s Medical Advisory Panel, told me that Orthodox fertility patients sometimes bring their Rabbi with them to consultations in an effort to reconcile their family-building goal, their diagnosis and the medical treatment available with their religious beliefs.  According to both Dr Fishel and Carolyn Cohen, there is no one rule which governs a Rabbi’s judgment about any aspect of fertility treatment; they take each couple’s situation on a case-by-case basis. The overriding intention is to help the couple achieve parenthood if at all possible.

As in other cultures that promote large families, there is enormous pressure on Orthodox Jewish couples to conceive early and often.  An infertile couple in that situation may feel particularly embarrassed, ashamed, judged, isolated and/or excluded.  Added to that, the extreme privacy with which matters of intimacy are regarded, it can be difficult for them to seek advice and support.  Chana successfully negotiated the interests and needs of the various members of the community by providing separate, single-sex meetings for men and women, and entirely separate seminars for
Rabbis, Groom and Bride Teachers attending.  This enabled members of the packed seminars to listen to matters of marital intimacy, such as the consummation of marriage, and ask questions after each presentation without the potential embarrassment of a mixed audience.   

Some of the lectures were all about the current status in a given area of fertility medicine, such as the one on recurrent miscarriage by Prof Lesley Regan, of St Mary’s Hospital, Paddington (London).  Prof Regan carefully explained the research in which her team is involved, why miscarriage occurs and the restrictions upon investigation and treatment under the National Health System. None of the facts or figures was specific to the Jewish community.  What made this lecture and the others unique was the context in which they were made.  Care was taken by speakers to respect the particular sensitivities of the largely Orthodox Jewish, female audience, how they communicate and the level of privacy they cherish. Their cultural norms also present characteristics that form a part of the patient's history to be taken by a fertility specialist. For example:

1.       Sexual history - Patients may be very reticent about matters of sexual function and intimacy, which are generally not discussed in mixed company.  Without a full and frank discussion of their sexual relationship, her menstrual cycle and fertility health issues such as sperm production, it could be very easy to mistake very early miscarriages for a failure to conceive or vice-versa, complicating potential treatment. Understanding of the sensitivities involved, as well as religious proscriptions against consummation of the sexual relationship prior to marriage, would be essential for a good doctor-patient relationship;

2.       Genetic History - there are certain genetic mutations which affect Jewish people, which would be exacerbated by inter-marriage within the relatively small Orthodox community. One in 27 Ashkenazi Jews are carriers of the gene mutation that causes Tay - Sachs disease, while only 1 in 250 Sephardi Jews are carriers. Therefore, genetic testing may be an earlier focal point in couples who are both Ashkenazi Jews. Additionally, the usage and source of donor eggs and sperm is of particular interest, so that any potential incestuous relationships among  future generations are absolutely avoided;

3.       Emotional aspects of the patient's infertility -  Because having children is such an integral part of an Orthodox Jewish's woman's life purpose and her marriage, those who fail to conceive could feel particularly pressured, leading to feelings of anxiety, failure and low self-worth.

Chana does not limit its support to the Orthodox community; however that is largely where its users are from. Perhaps it is because Jews from other sects do not feel as strong a connection between their Judaism and the medical decisions they need to make.  However observant they may be, it may simply never occur to members of the Reform or Liberal Jewish movements to consult their Rabbi about an inability to conceive, a need for assisted conception or a decision to stop trying when IVF fails.  It is likely that they believe their needs for emotional support are adequately met by other people who are trained in talking therapies and/or infertility. While I didn’t glean any definitive information about how fertility treatment is viewed in relation to Halachic Law, I did come away with the feeling that Rabbis seek, where possible, to permit medical assistance for infertility rather than preclude a couple from having a family of their own. 

If there was one element missing from the conference, it was the absence of any personal examples of how infertility affected members of the community and how they have resolved or might be able to resolve them. I didn’t hear anyone speak publicly of their personal experience with infertility, or with their need for medical assistance and emotional support.  Questions for the speakers were carefully phrased very generally or technically, changing the nature of the intended “workshops” to more of a lecture or presentation.  It was not until I had a chance to read the very personal, albeit anonymous, stories, poetry and letters in the remarkable Chana Magazine, that I understood the unique social repercussions of infertility in the Orthodox Jewish community and how Chana’s services are a lifeline for those affected. The message was clear: no one in the community needs to bear the pain of infertility or pregnancy loss on their own. Isolation is unhelpful; reaching out is worthwhile; help is available.

ASRM 2010: Just Say NO

by Merry Armentrout

ASRM leaders took advantage of this year's gathering in Colorado to sound off about the state's proposed Amendment 62.  If passed, Amendment 62 would give legal rights to fertilized eggs, which means a fertilized egg would have equal rights to a human being.  ASRM held a press conference this morning to state their fervent opposition against Colorado's Personhood Amendment, calling it a "deceptive and dangerous measure." 

ASRM President Dr. William Gibbons started off the press conference by saying the organization represents the doctors who care for the 1 out of 8 couples in the U.S. suffering from infertility, and applying personhood to any human being from the beginning of biological development is denying those infertile couples the solution to help build their families.  ASRM is bringing $12 million to Denver this year, and Gibbons indicated if the amendment was passed it would effect any future decisions to hold this meeting in the state of Colorado.  He went on to acknowledge the irony between this upcoming vote on 62 on November 2nd, and the recent recognition of Robert Edwards, who helped develop IVF, as a Nobel Prize recipient. 

Dr. William Schlaff, a board member for ASRM, focused on the dangers of this amendment on infertility treatments, including embryo transfers.  If an embryo is considered human, than a woman undergoing IVF would have to transfer all her embryos into her uterus- this would be very dangerous for not only the women's health, but also greatly increase the number of multiple births.  Schlaff also talks about an anticipated increase in genetic diseases because an embryologist wouldn't be able to discard abnormal embryos, and would be forced to implant them into the woman's uterus. The decision about which and how many embryos to transfer should remain in the hands of the physician and couple undergoing IVF, and be based on hard scientific evidence. 

Schlaff gives an example from Shady Grove Fertility, the largest U.S. fertility clinic, of the how many embryos could be effected by the passage of this amendment.  From 2005-2008, Shady Grove did 14,500 IVF cycles, producing 200,000 eggs from those cycles.  57% of those eggs were fertilized, and only 7.5% of the fertilized eggs would go on to become children.  He says this amendment isn't about protecting every person, but a direct assault on Colorado's efforts to build families in a safe manner. He goes on to discuss how unused embryos are often donated towards the studies for cures for such diseases Alzheimer's, diabetes and spinal diseases. 

ASRM member Dr. Nanette Santoro spoke about how the personhood amendment could effect family planning and emergency contraception.  She says 43 million sexually active adults in the United States, and of those, 89% are practicing safe sex with the use of birth control pills. There are 2.9 million youths having sex, and 54% of those use birth control pills to prevent pregnancies.  Santoro says the amendment has a far reaching effect on women's health and autonomy.

ASRM, along with The AFA, are urging Colorado residents to vote NO to Amendment 62 on November 2nd.

A chance to listen, learn and speak at PET's Debate: Paying Egg Donors - A Child At Any Price?

by Lisa Marsh, The AFA's London Correspondent

There are times when I feel very fortunate to live within easy commuting distance of central London and last night was one of those.  Instead of the usual household chores and evening TV shows, I popped into London to attend a debate organized by the Progress Educational Trust (PET) at the Royal Society of Medicine: "Paying Egg Donors: A Child At Any Price." It was well worth the effort, to be privy to the information and opinion of several eminent speakers on the panel, as well as those audience members from the fields of medicine, counselling, government, related charities and scientific research.

One thing about which there is no debate is the extreme shortage of egg donors in the UK. The Human Fertilisation and Embryology Authority (HFEA), which currently regulates the providers of fertility treatment such as IVF using donor eggs, will be considering various models of compensation in January, 2011, as a possible means of boosting supplies of donor eggs. as well as reversing the increasingly popular choice among British residents to travel abroad for fertility treatment.  At the last HFEA Open meeting on the 8th of September, 2010, which I attended, its chair, Prof. Lisa Jardine, made no bones about the fact that she is concerned that fertility treatment providers in foreign countries may not be subject to the same stringent oversight as in the UK, therefore creating a risk to patients. Others' objections to "fertility tourism" may be equally concerned about the loss of revenue to UK fertility clinics, exploitation of egg recipients' desperation for a baby, and the trading of human, genetic tissue (gametes) as a moral issue.

Currently, in the UK, egg donors are only compensated for their expenses, which include loss of earnings for days of work missed; a daily maximum of £61.28 or a total of £250.  The questions regarding payment were these:

1. Should compensation merely compensate for lost earnings, or for additional factors such as risk to the donor, drug treatment, sexual abstinence and/or pain and discomfort? If the latter, then how much compensation is reasonable, to leave the donor no worse off than she was before the egg donation, but no better off financially?
2. Is egg sharing morally favourable because the donor is giving her eggs to another woman, or is it merely a financial transaction (trading of human eggs for financial gain) by another name (donors receive a discount on their IVF)?
3. Should egg sharing be limited to altruistic donation in which the donor has no expectation of any financial payment, or other compensation?
4. If there is no legal barrier to a woman giving her eggs to someone else, why shouldn't she be able to sell them?

One panel member, Brenda Almond of the Philosophical Society of England, likened the trading of genetic material, cells, to the slave trade.  She cited libertarianism, as a philosophy holding that the vulnerable should be protected, to support her assertion that human eggs, which could one day become embryos and eventually, a living child, need protection. I assume what she meant is that the children who are born of those eggs are not able to assert free will over how the transaction takes place.  She also posed the question of whether, by performing donor egg IVF, clinicians are violating the "do no harm" rule, as there is inevitably emotinal impact upon the donor, the recipient, the donor's children and the recipient's child.

While I don't doubt that Ms Almond holds sincere views on the subject, these controversial views, were, in my opinion, stated for effect last night. While I don't subscribe to her views, I was very open to hearing everyone, but found her to be the least persuasive of all the speakers. My belief is that the slave trade argument doesn't apply, as :

1. the egg is not "human flesh;"
2. if produced by the donor, but unused to create a pregnancy, it would otherwise go to waste; and
3. there is no human child, if the egg is not fertilized with the intended father's sperm and carried in the intended mother's womb.

Opinions diverged widely during the debate, much of it focusing on what the donor could reasonably expect to receive for giving her eggs to intended parents. In egg sharing a woman, who is already planning to have an egg retrieval for her own IVF, can expect to receive £2 - 3,000 worth of fertility treatment as a benefit.Several people present last night voiced opinions that egg sharing is really egg trading because of the value of the benefit received, making it a financial transaction by another name.

But, what of the healthy, fertile woman who doesn't need IVF? She may want to give her eggs to a specific woman; a sister, friend or stranger, completely from a place of generosity. There are avenues for making this gift, such as Altrui - an egg donation scheme that matches donors and recipients. One such woman, Laura Witjens, Chair of the National Gamete Donation Trust, and a mother, sat on last night's panel, personally advocating a payment to egg donors of approximately £700.  She believes that amount would be enough to cover the donor's costs, and constitute a gesture of appreciation for the value attached to the donation, without being potentially exploitative....not enough money to change the donor's life, pay off their debt, etc... Interestingly, while Witjens' twins were naturally conceived, she stated that if she had been infertile, she absolutely would have paid for eggs to become a mother.

Some of the people present at the PET debate, both on the panel and in the audience, batted back and forth the idea that knowing their biological mother received payment for the egg that created them would be psychologically damaging. Some people may have difficulty coping with the knowledge that they sprung from a donated egg, regardless of the issue of payment. How is this scenario any different from adoption, where adoptive parents must prepare themselves for educating their child about their origins in a sensitive and understandable way? Raanan Gillon, Chair of the Institute of Medical Ethics, countered that argument in the best way possible; saying "the alternative to having a donor-conceived child be upset about the egg being bought, would be that they don't exist at all." Quite right. How many people would wish they had never existed and their parents never having had children, rather than any payment being made to the donor?

In regard to the argument of almost-inevitable harm, I have to ask: "so what?" The donor should be provided with counselling prior to carrying out the egg retrieval and donation, to ensure that she understands the physical risks and emotional ramifications involved.  Her existing or future children can be raised with the message that Mom did something generous to allow another woman to have a child who would not otherwise have been able to do so. The recipient is surely informed about all of the angles of the process and should be counselled up until she conceives, if not afterward as well. The donor-conceived child is the one who needs the most attention and sensitivity.  Yes, there is a risk, especially in cases of anonymous egg donation, when there will be a loss of genetic connections with biological maternal relatives. This could cause feelings of not belonging, incomplete sense of identity.  However, anonymous donation was not the topic of the evening.

In the case where the donor-conceived child will have the right to seek their biological mother at the age of 18, his parents have the responsibility of preparing their child adequately for what he may discover. Prof. Brian Lieberman, Medical Director of Manchester Fertility Services, called for all of the exchanges taking place in egg donation to be open and transparent. I believe it was he who said that his overriding concern for the donor-conceived child is that they are able to feel proud of who they are and how they are created. That, to me, is the goal in raising any child, conceived naturally, through assisted reproduction techniques or adopted. That message is one of love and belonging.

Much was made of the US free-market model for egg donation, the range being quoted as anywhere from £8 to £19,000.  While Prof. Gillon did not see payment for eggs, in itself, morally objectionable, the consensus of most panel members and speakers from the audience was that if payment was made it should be a regulated, fixed fee, rather than a market-driven fee like in the US.  Among that group, a lump-sum fee of an amount between the current £250 and Laura Witjen's suggested £700 seemed to be favoured; the amount resting on the difference between inducement and coercion.  For those willing to embrace a fee at all, this amount was sufficient as an inducement to give something of value, the egg, to someone else which requires the donor to experience some physical risk and inconvenience. Anything more, in their opinion, could make a change in the donor's lifestyle, therefore running the risk of coercing that person to do something which they might otherwise believe immoral or otherwise wrong. Dr Sue Avery, Director of the Fertility Centre at the Birmingham Women's Hospital and a panel member, felt that the "lump sum argument is fallible, because any amount will be an incentive to someone to do something they would not otherwise wish to do."

You may be interested to hear my contribution to the debate. I had had no intention, whatsoever, of speaking; however at the end of the evening, I felt it necessary to point out that it was all well and good debating ethics in a vacuum, but it should not be forgotten that real people are involved here.  The British government, associated with the Church of England, promotes family values. The evidence is undeniable that most people want to create families and they are not willing to let a diagnosis of infertility come between them and a baby. The country is proud of the breakthroughs in medical science that have occurred here, and more money has been made available for fertility treatment through the National Health Service (NHS). However, there are still many couples who find themselves shut out, some by the severe shortage of donor eggs available.

I shared with the PET audience that my husband and I never got to the point where I was told I couldn't go any further because of a shortage of donor eggs. We felt let down by the medical system here that moved at a snail's pace in responding to my infertility and then told us I was too old to qualify for IVF under NHS regulations. At 42 years old, with few quality eggs left, using donor eggs would have had to be my next step if we had gone further. (I am one who, like the cliche, miraculously conceived naturally 3 months after my failed IVF cycle.) I have clients who are in the same position now that I was in ten years ago. Faced with the probability that their own sub-standard eggs mean they will never conceive, I believe that most women would be willing to pay something in appreciation for this priceless gift from another woman.

As Laura Witjens pointed out, "patients vote with their feet." If they cannot get access to the assisted reproduction techniques they need to create their families in the UK, they will seek them out elsewhere, even if payment must be made. If the government wants those needing fertility treatment to stay in this country, it has to make concessions to the needs and desires of those concerned. It can't rely upon "in the best of all possible worlds..." but, instead, must make the world we live in as easy to negotiate as possible, in a positive way, aimed at a positive result.

If you have been an egg donor, used donor eggs or just have an opinion about whether payment should be made to an egg donor, and if so, how much, I would like to hear from you.

Lisa Marsh is an American fertility coach who lives and works out of London, U.K. and London correspondent for The American Fertility Association's blog page.  You can find more information about Lisa’s work at http;//yourgreatlife.typepad.com  or follow her fertility and miscarriage-related Tweets on Twitter @yourgreatlife.

Serving those who hate.

by Corey Whelan

On Facebook, twitter, linked in, all of it, we tend to create networks of people who rubber stamp our ideas.  We get thumbed up a hell of a lot more than we get thumbed down, have you ever noticed that?  It's a funny thing to me, really, because my organization, my beloved organization, The American Fertility Association, is unique.  We aren't looking for a rubber stamp.  We are about family building and we are all inclusive.  We wrap our arms around the world and we do it with gratitude.  We welcome everyone, not just the population of people who sometimes call themselves "infertiles".  I hate that term, by the way, but that's not what this blog is about.

We serve everyone who needs us.  We welcome, encourage, support and educate anyone within our global family who is striving to create and raise their own, smaller, part of that family. 

Obviously and of course that includes LGBTQ individuals.  Lesbian, gay, bisexual, transgender and questioning people.  Of course.  Because people are people and families are families.  I say this with honor, consciousness and pride.  An overused word but I mean it from my heart, especially today.

Ok.  The AFA does not segregate our mission or our lists.  We put important family buildling information out there for everyone to access and to learn from.  Why am I talking about this now?  Because The AFA's posts about Spirit Day, an international initiative spearheaded because of the tragic, senseless suicides of six young kids who were bullied and pushed because they were gay, was greeted with a number of jeers and hate filled responses by women who are currently trying to conceive, on various pages online.

I read thoughtful posts as eloquent as "ugh".  I read posts that said "No one should be gay it's disgusting".  I read and deleted other posts I won't acknowledge here.  I got angry and I got sad and then I got angry again. 

So this is the piece for me, as a mom, that rises above all else.  I want to say to these women (at least on the various pages I read it has not been men) I want to say, what if the baby you are praying for, struggling for, dying for, is conceived by you and turns out to be gay?

What then?  My daughter was watching a TV news report yesterday about a young boy, obviously to her at least gay, whose family had an exorcism performed on him.  So is that your plan?  What's your plan?  What's your heart?  Tell me.  Tell yourself. 

The AFA is an open arms organization.  We want you to get the best, the most up to date, the most honest information that you can when you are building your family. We don't ask your sexual or political orientation.  We don't care about it, it doesn't affect our mission of serving you.    

I personally however have a request of you. I have something to ask, of all of the hate filled women who attempted to stamp that hate on a day about love, on a day about saving children's lives.  I ask that you re-think your entrenched, taken for granted views.  Yes, that's what they are. I ask that you think about the children.  The children here now, the children you hope to have some day.  Your chidren.   The perfect children you dream about when you think about getting pregnant.  Think about them. 

Look, I know I won't change any minds or hearts on this page today.  The collision of populations that we, our organization, serves, has served up something else for me, for us today, and I needed to give voice to that.  However, my request to you, stands.

It only hurts unofficially

by Ken Mosesian

Monseigneur Ignacio Carrasco de Paula, who heads the Vatican's Pontifical Academy for LIfe, spoke with the Italian news agency ANSA this week.  He commented about the Nobel Prize for Medicine being awarded to Professor Robert G. Edwards, one of the key inventors of IVF, and called the selection, among other things, "completely out of place." After the interview he clarified that those remarks represented his personal opinion, and they were not the official statement of the Pontifical Academy for Life. 

Later, in a written statement, Monseigneur de Paula acknowledged that IVF "ushered in a new and important chapter in the field of human reproduction in which the best results are visible to everyone, beginning with Louise Brown." 

Continuing, he said that "without Edwards there wouldn't be a market for oocytes, without Edwards there wouldn't be freezers full of embryos waiting to be transferred in utero or, more likely, to be used for research or to die abandoned and forgotten by everyone."

Numerous callers have weighed in on this over the past couple of days, reminding me of the power and influence of religion in the area of fertility. It also reminded me that most people don't look for the nuance in statements from the Vatican. Yes, IVF is condemned by the Church. But notice that Monseigneur de Paula also identified Louise Brown as one of the visible "best results" of the technology. "Hmm..." I thought. "Why would he say something positive?" 

We could argue the Vatican's stance and the ways in which statements are nuanced from now until the end of time, but that's truly not the point of this blog. I told one of the callers who was quoting the unofficial press interview before the statement was issued, to not take the comments too seriously. "They're unofficial" I said, trying to comfort her. "Oh, in that case it only hurts unofficially," she said.  I got it. 

Even those who identified themselves as "fallen away" Catholics still felt stung by the statement. "Why was it even necessary" one asked. "We know where the Church stands." Another said that she thought so little of the hierarchy of the Church given the ongoing and widening child abuse scandal, that she was amazed that she even cared about what they had to say. But she did. "It's still my Church. The Church of my parents and grandparents. And I keep hoping for compassion. It's my child they're talking about."

What I can offer you is this: if you are a Catholic, talk with your Pastor about your feelings. If you're able, "come out" to your Pastor if your child was born as a result of IVF or if you are currently in treatment. Changing hearts and minds is the most effective means to ultimately changing laws. And in the mean time, it's the best way to channel any anger you may have over this issue. 

 

 

 

 

The American Fertility Association Celebrates Nobel Prize Winner

 

 

NEW YORK, Oct.4- The American Fertility Association (The AFA), a national non-profit organization, commends Nobel Committee members for awarding Professor Robert G. Edwards the Nobel Prize in medicine.  This highest honor was given to Professor Edwards for his contributions to developing in vitro fertilization (IVF), a method that involves combining an egg with sperm in a laboratory dish.  The development of IVF greatly increased the chances for infertile patients to conceive a child.  The first “test tube baby”, Louise Brown, was born in 1978, and since then almost 4 million babies have been conceived through IVF worldwide. 

 “IVF has gone from controversial to commonplace and is more affordable and accessible to people seeking to build a family than ever imagined. Everyone today who sets out trying to have a family owes Bob Edwards a debt of gratitude because if they should ever run into a problem, there is an effective treatment ready to help them,” says Dr. Alan Penzias, a reproductive endocrinologist practicing at Boston IVF.

 Infertility is not uncommon. One in eight couples in the U.S. is diagnosed as infertile.  The AFA is committed to preventing infertility whenever possible, and to helping people build families of choice, particularly when faced with infertility.   “The American Fertility Association congratulates Professor Robert Edwards on being awarded the 2010 Nobel Prize in medicine for his development of IVF,” says Ken Mosesian, Executive Director of The AFA. “Edwards, along with co-developer, the late Patrick Steptoe, have enabled many of those dealing with infertility to experience the joy of family.”

The AFA’s mission is to advocate for, educate and support all hopeful parents through an extensive online library and creative education outreach events across the United States. The organization knows how important unbiased, easily understandable and complete information is, as hopeful parents engage in the journey towards having children. As the subject of IVF becomes more frequently discussed in the mainstream, more people are turning to The AFA as their key source for education about this subject. More than 94,000 visitors came to The AFA online (www.theafa.org) in one month alone, and hundreds call the toll-free support line. 

This year’s Nobel Prize in medicine brings attention to infertility, a disease which has routinely been associated with shame, and will hopefully begin to normalize the conversation about reproductive health in the mainstream.

 

Media Contact:

Merry Armentrout

Director of Communications

The American Fertility Association       

603-763-1133 or [email protected]

 

About The AFA:

The American Fertility Association, a 501 (c) (3) national non-profit organization is a lifetime resource for infertility prevention, reproductive health and family building. The AFA's services and materials are provided free of charge to consumers are available to everyone without reservation. These include an extensive online library, a daily blog, telephone and in-person coaching, a resource directory, daily fertility news, a toll-free support line, and education outreach events.

 

Photo: aol